My name is Rebecca Riley. I live in Ogden, Utah, with my husband, Josiah, and our seven children: Reva (16), Robert (12), Ricky (10), Rose-Marie (11), Rudolph (10), Rachel (8), and Rydon (Donny), who is five.
We used to belong to the fundamentalist branch of the Latter Day Saints of Jesus Christ, but we left; we felt that the church was nothing but a disappointment to us. There was so much rigidity involved, and there were so many dark secrets that I had come to find out about over the years; I didn't want any more part of that, so I left, as did my family.
We are much happier now. We are currently looking for a church to call our own, but so far, nothing's turned up.
Right now, though, I will continue to raise my children as I see fit, give them religious instruction and teach them on a homeschool level. So far it's been working out just fine.
It isn't easy, especially since our youngest (Rydon, or "Donny" as we call him) is so handicapped. He requires total care, twenty-four hours a day. Feeding by way of a tube in his belly. Diapering/dressing. Giving him crushed medications through his tube every four hours. Bathing him. Brushing his hair and teeth. Making sure he is happy, healthy, or at least comfortable.
Rydon was born seemingly healthy; at a few months of age, however, we noted things weren't quite right. He didn't seem to be developing on target; he lagged behind his brothers and sisters, and he would have seizures. He was frequently sick; he proved to be an extremely unhappy baby.
We took him to the doctor; it was our doctor who suspected that something was going on; as to what, that was the question on everyone's minds. It was a very scary, unsettling time, but nothing like when we got the diagnosis after subjecting our son to many tests, to see what was wrong.
It turned out that he had fumarase deficiency disorder, which is, basically, an autosomal recessive metabolic disorder caused by a faulty gene that we both had in our makeup. It causes a buildup of fumaric acid in the urine; it can cause lots of problems, among them being severe mental retardation, seizures, encephaly, and malformation of the brain.
Nothing really can be done to help Rydon except, perhaps, keep him comfortable, happy, clean, and as healthy as possible. Sometimes he ends up in the hospital; his resistance to sickness is poor; he can catch any little bug that comes his way, and something like a cold or the flu can prove to be extremely life-threatening for him.
I can't tell you how many times Rydon's nearly died. Too many to count. It seems at times we live more at the hospital than we do at our very own house!
Because of his problems, Rydon is unable to walk or talk. He can't feed himself, brush his hair or teeth, bathe himself, or dress himself. He is not toilet-trained; he will always require twenty-four hour medical care. He is fed by a tube in his belly; we pour his "food" or his (liquid) meds down the tube; we then let gravity do its work; it pulls what is in the tube directly into his belly, and it goes to his digestive system, since he can't swallow or chew by himself without risk of choking.
Rydon is in a wheelchair, as you can very well imagine. He is like a big rag doll; we have to position him every few hours, so he doesn't get any bedsores or pressure sores from the wheelchair. It is a chore caring for him, let alone, six other children who need our attention just as much as Rydon does.
We don't know what the future holds for Rydon, but all we can do is raise awareness of this devastating condition and ask for understanding or acceptance; we want people to see our son as a child with a disability, not a disabled child. We want him to be treated with lots of love, dignity, and above all respect.
Well, Rudolph, Rachel, and Rose-Marie are all clamoring for my attention, so I'd best see what they want. It's also about time to wake up Rydon, who has been napping for the last two hours. I will write in here again another day; until then, this is Rebecca Riley saying so long and God bless you! Thank you for listening to my story!
~Sincerely, Rebecca Louise Riley, Ogden, Utah.